Measuring the Numbers of Untreated Obstetric Fistula: The Example of Ethiopia
While Ethiopia has experienced a reduction in the number of obstetric fistula cases over the last 10 years, estimating the number of women who have untreated obstetric fistula remains complex. We are closer to reaching a fistula-free Ethiopia, but there are still thousands of women who require care.
While recognising the importance of other causes of fistula, this post will focus on estimating the burden of obstetric fistula, which remains the most common cause of female genital fistula in Ethiopia. Obstetric fistula occurs when women do not have access to timely, high quality care during childbirth. In settings where obstetric fistula is still a significant problem, health information systems are often incomplete, with gaps in routine reporting of births, maternal deaths and complications during childbirth, particularly for home births. As a result, knowing the precise number of women who have an obstetric fistula—and planning for their treatment—is very difficult. Different settings use the following various methods for estimating the number of women with obstetric fistula (as Tunçalp, Tripathi, Landry, Stanton and Ahmed described in 2015) and many face ongoing measurement challenges.
Large national surveys
The most common survey conducted in many low- and middle-income countries is the Demographic and Health Survey (DHS), which involves going from house to house asking a large sample of women if they have symptoms of obstetric fistula, such as urinary incontinence following childbirth. The challenge with survey questions is that there are some other conditions that can also cause incontinence. The result is that these surveys may overestimate the number of women with an obstetric fistula.
Conversely, some women who have an obstetric fistula do not participate in any surveys to estimate fistula numbers due to their social exclusion. In these cases, the surveys will underreport the number of obstetric fistula cases.
Surveys with follow-up physical examination
To overcome the difficulties in DHS surveys, smaller surveys have been done with follow-up medical examination to identify whether a woman who reports urinary incontinence after childbirth has a fistula.
Surveys that include a follow-up physical examination give more accurate data about the number of fistula patients, but they only represent the area in which the survey was conducted, not the whole country. We know that fistula prevalence is directly related to how difficult it is for women to access high quality health care during childbirth.
If the region where this type of survey is done does not have many hospitals and women live in very remote and mountainous areas, there will be many more fistula cases, than if the same study was conducted in a different region of the same country where road access and hospitals might be much more accessible. Consequently, surveys that have a physical examination component will be much more accurate but may not be nationally representative.
Comparing national survey data and specific fistula surveys to derive a national estimate
Surveys that have had follow-up verification with physical examination can be used to estimate the over or underreporting of national surveys. Comparing the information on the reported fistula numbers from a region within a large national survey and the same region that had a targeted survey with examination follow-up can give a clearer idea related to the accuracy of the national surveys. This has been done in Nigeria and Nepal, but not to date in Ethiopia.
All of these survey estimates have challenges in generalising to the whole population, and so the estimates are just that—estimates. Hence the difficulty in assessing the true numbers of untreated fistula in a county such as Ethiopia.
Applying this analysis in Ethiopia
Ethiopia is renowned for the work undertaken through the Addis Ababa Fistula Hospital, established in 1974 by Doctors Reg and Catherine Hamlin. Some 60,000 women have received surgical treatment and through their training of national gynaecologists, an increasing number of maternity hospitals across the country have the capacity to repair a simple fistula. The government of Ethiopia has a vision to eliminate fistula by 2030. There was a large national survey, the 2016 Demographic and Health Survey, which asked a sample of more than 15,000 women of reproductive age questions about obstetric fistula, and there have also been surveys with follow-up examination to provide a more accurate estimate of fistula in two parts of one region of the country. Table 1 highlights the challenges of measurement. There are five different sources of data and five different estimates of obstetric fistula prevalence! Some measure the prevalence amongst all women, while other give the prevalence amongst women who have given birth, all of which makes comparisons difficult. Some may also be including women who have a fistula from other causes including trauma or as a complication of surgery, not just as a complication from obstructed labor.
1. There has been a significant decline in the number of new cases presenting at Hamlin Fistula Ethiopia (HFE), based on the hospital admission data, which can mean there are fewer new fistulas occurring but also reflects the fact that HFE has trained many Ethiopian obstetricians on how to perform simple fistula repairs, and many of the simpler repairs are now being performed in hospitals around the country.
2. There are still many thousands of women who have untreated fistula in Ethiopia. Estimates vary, but there are some 22.5 million women of reproductive age in Ethiopia. If we use the 2014 survey of 0.06% with untreated fistula, that translates to 13,500 untreated cases across the country (but those zones may not represent the whole country). In the most recent DHS, the 0.4% translates to 90,000 women who have ever had a fistula—but includes those who have had repairs (and we know that some 60,000 women have been treated at HFE hospitals since 1970, which still leaves many women untreated).
The efforts of HFE, the government of Ethiopia and many other organisations are improving access to timely, high quality childbirth services. While work remains, the vision of a fistula-free Ethiopia is attainable.